Hi all! Just a little question. I went to church today and was having a high pain level day. While I was there, I had three very sweet and caring friends pat me lovingly on the shoulder and back. Needless to say, I was really singing AMEN. How do you all deal with people touching you in public or going somewhere that there is "people congestion"? I really hate to have to give up church too, it seems like I have already given up so much, but I just can hardly stand to be touched by anyone. Any help would be appreciated, I do not want to offend people, and I know that the people at church really care about me. Thanks, Lisa

I hope I can help you out Lisa...I know at my church the very first pew is larger..more space in front of you and back..AND it is auto serve as you never have to leave your seat for communion...Possibly you would be more protected sitting there.it's actually a handy cap sitting area..I scout those down everywhere I go...

How did I do..Sorry for your awkward moments today... Bless you!

Hugz, Kathy

Oh, I have the same problem. My RSD is my left hand and arm. I feel bad pulling away as many don't know or understand. I don't even understand. How do I explain to them? I feel like I need to walk around with a "do not touch" sign. I am involved with a 4H group with my kids and the kids are more cautious of my left side than parents are. Many days I have a nice, comfy mitten or glove on my hand if it's cold. The kids again, are great but parents just don't get it. When I had a cast on my arm they understood and were helpful and great. I have tried to maintain as normal a life for my husband and kids but when a party or night out with friends comes up i am so nervous.

I will say that I have recently been using a tens unit. At first I didn't like it but now I love it. It comes with a glove that my Dr thinks would really help but I cannot tolerate the feel of it. Anyway, if I am going out somewhere that makes me nervous I use the tens before and bring it with me so if I can sneak away I will use it. If only it were wireless. I also have a compound gel that helps on really sensitive days.

I bet we all deal with what you are talking about. My Grandson's hug me softer then most people and boy do I live around huggers. I didn't grow up with hugs even though there were 10 of us kids. Mom and Dad did good to keep us with us so they didn't have time for the hugs. i was also abused as a child so hugging was not something I wanted. After councelling and a hugging Dr. and best friend, they have taught me to let people hug but like you I dread it. I can't even stand to touch myself. I don't have the answer though, I kind of cringe and they do know my problem. You just get tired of explaining yourself about no touching.

I liked my tens unit too. I used it for a few years to help me.

Ada

Hi Lisa and Friends,
I hear ya! I know people are just trying to be nice and there are some people that much touch you to make you know you are special but it is terrible for us that don't want to be touched due to our RSD. I have been in the hospital having Lidocaine treatment and have had nurses come up and touch my feet (my right foot is where the mess began and I've had full-body for about 5 years now). Ouch it hurts...for hours too. I've also had a relative give me a big strong handshake and I thought I was going to scream. Why he did that is beyond me since he is a pretty wimpy guy but maybe he had a few drinks in him at the wedding reception. Who knows. People don't understand if my foot was the initial trauma then why do my hands hurt so much? It is an everlasting ongoing educational experience for me wherever I go...as it is for everyone here. It was nice to read that some of you get nervous before going to a party or get-together since I just dread going out anywhere. It's nice to know that I am not the only one that feels the same way. If I told my family members how I feel they would not get it and think I just did not want to go. Hang in there and when you see folks coming near you to hug you, etc... just put your hand up and tell them you can't have them hugging you due to your disability...but would love an "air" hug instead. Good luck,
Kathy d

I have just said 'that really hurts' over and over and over and over, and nobody touches me anymore. lol. And when they ask why, i say it just does. If you really want to know it'll take a full dinner to explain. But ' it just does' tends to do the trick, and people just say oh ok. and dont touch me anymore.

Oh boy! I had a doc appt with my pc doc today and ran into a nurse who had never heard of RSD. She was really rough with me. I had to have an EKG, and she grabbed my arm to put it where she wanted it, slapped a sticky on it and ran into me several times while I was laying on the table.

I was then sent to the hospital to get wired into a 24 hour heart monitor, again by a nurse who had never heard of RSD, and was told not to use my TENS unit, heating pad or electric blanket.

I was really upset that these health care professionals had no knowledge of this disease and further more had NO desire to learn about it or ask me about being touched. Needless to say, I am miserable tonight and really dreading the ECHO that is to come on Tuesday. How do you get these people to listen to you and why are they not educated?

Sorry for the rant, I just needed to vent- cool mist only, no heating devices. Hope everyone is having a comfortable evening, Lisa

Hi Lisa and everyone who answered her post. I've had RSD 15 years and now full body, so have had various parts sensitive One of my worst experiences was from a Dr. checking my hand- I screamed in pain and he even misdiagnosed.
Like yourselves, until I went thru desensitizing my limbs, I was untouchable and dreaded being around people. Using a Tens Unit-soft glove is helpful. I was wondering if you wrote a letter, say to a friend from the church, 'To all My Friends' Explain how much seeing them warms your heart, their expressions of care is greatly appreciated, but needs to be limited to not touch as your disorder deals with the nerves, which are very sensitive. A smile is appreciate, just words of caring, rather than tough is what comforts you now. You hope to get better, but as of now-no cure. Thank them for their care and you treasure their understanding. If the one friend could pass it around to your friends or even ask your Dr. if a sling would be OK for an hour.
I hope somethings helps. We need our friends. We are alone enough and isolated enough, so any contact that is upbuilding is important to not give up.
Hoping for the best for you. One of your new friends, loretta